22 years old With Osteomyelitis in my jaw- 8 years of pain -
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It is quite difficult to start writing about something which has been such a big part of my life for 8 years. I will start from the beginning...
It started when I was 14 out of nowhere. The dentist I saw said I had a displaced jaw bone and this was the reason for my pain. I will always remember him asking if I had a boyfriend 'as kissing would make it worse?!' I did not. So at this stage I thought that this was the reason for my pain - a displaced jaw bone. I was given 600mg of Iboprufen and took this every day alongside paracetomal (8 tablets a day).
Over the next year the pain got particularly worse and my face swelled like a balloon. At the age of 15 I did not sleep at all. I had constant pain and was taking as much painkillers as I possibly could. The swelling got that bad on the right side of my face I felt like a monster. I grew my hair to as long as I could and would constantly cover my face with my long hair and a scarf.
Over the summer it would be increasingly difficult to cover my face without a scarf and when I was 15 I could no longer take this pain from my 'displaced jaw'. My mum and dad took me to A&E. Instantly the doctors here realised something was not right and I was admitted. Many tests were done to see what the problem was. I was discharged from hospital with painkillers and had to wait for my results.
I went to see one doctor for my results who I had seen whilst in A&E she specialised in cancer but luckily I was told by her I did not have this.
I had tests such as blood tests, bone scans, MRI scans, CT scans and a biopsy which told me that I had Osteomyelitis in my right lower jaw bone. I was referred to a very good consultant in the 'maxfax' department. He said that the steps that would be taken would be firstly an operation which would be done internally to shave away the acess bone and would hopefully relieve me of some pain. Whilst waiting for the operation I was given the antibiotic Amoxycillin.
I had the operation when I had just turned 16 I think. By this point I had not had a full night sleep for a year and a half. This was very frustrating as I was trying to live a normal life as possible. I was trying to be a good student at high school and not get behind with work. I was in excrutiatiing pain- I constantly felt like I was being viciously stabbed in the right side of my jaw. This pain often went up into my ear and below my eye. Often I was in too much pain to attend school, luckily I had one amazing teacher there that always sent work home and constantly reassured me that everything would be fine. I was particularly worried as this was happening whilst I was preparing for my GCSE's.
After the operation my face was badly bruised and I had very bad swelling. This was expected though as the operation wasn't plain and simple. One part of my face looked as though I had a tennis ball in it. I also had drains coming from underneath my chin that was draining access blood. I recovered in hospital for around 10 days and was given oral antibiotics to take home.
I saw my consultant regularly. Once the swelling had gone down from the operation- the swelling that was normally there from my osteomylitus wasn't as bad at the side of my jaw as this had been shaved away. Swelling of the bone was still there though. My consultant suggested I have hyperbaric treatment every day for 6 weeks. I was just waiting for a space to become available.
A space came available for the hyperbaric treatment - I remember being at school , I was taken out of my class to be told this treatment was going to start. I cried. A mixture of relief that the pain and this horrible swelling might eventually go. Again I missed a lot of school as I went every day to hull for this treatment. I have sworn to myself I would never have this treatment again. Hyperbaric treatment helps to get oxygen to the jaw so there is a better blood supply to the bone. A lot of cancer patients attended this treatment also. I had to enter a tank every day- put a oxygen mask over my head - something I can only describe as something astronauts would wear! For around two hours I was In this tank with a nurse and around 6 other patients- the pressure in the tank is changed and you have to make your ears pop like you would do on an aeroplane before the pressure goes below a certain number- a weird treatment but I can see the logic in it. I don't think the treatment really worked for me to be honest and I wouldn't do it again- but it may work well for others.
For the next couple of years I went on to do my a levels. I was on long term anti biotics as the osteomylitus had not gone away. I found Amoxycillin did not work for me so I was put on long term penicillin whilst on painkillers. I found that stress aggravated my jaw bone and I had episodes where my jaw would swell up more. At this point I had always said to my consultant that it may be my wisdom teeth were making my jaw worse. I was put to sleep and I had these removed from my right side- my pain did not stop so unfortunately this was not a cause of my osteomyelitis.
After my A levels I decided to take a year out and work full time at the job I was currently working part time at. At this point I was 18-19- during this time as I was older I could take stronger pain killers. I am intolerant to codeine so my options were ibuprofen and paracetomals or dicloflenac when this didn't work I would take tramadol which would have horrible side effects. When these did not control my pain my only option would be to go to A&E and be admitted to have stronger pain killers and anti biotics through an IV.
When I was 19 I was admitted to hospital because I was in so much pain. My consultant wasn't around at the hospital in this occasion so people he worked with decided they would operate as they wanted to drain my swelling at the side of my face of fluid as the swelling was getting uncreasingly worse. I have forgotten to mention that most of the time the opening of my mouth is restricted due to the swelling in and around my bone. This is another reason for operating. When they operated there was not a lot of fluid. The IV antibiotics took my pain and swelling done as well as a lot of morphine! And this episode seemed to be over with.
That's what there seems to be these episodes where my face swells and which then leads to a lot of pain. Some times I go months without these flare ups. From the age 19.5 - 21 I had minor flare ups which were bare able.
At 19 I started the studying for my 3 year course for my degree- I didn't want this horrible infection to take over my life. During this time I was given a mouth guard to wear at night to make sure that grinding my teeth is not an aggravating factor, and I also had root canal treatment to make sure I had nerves in my teeth and that a tooth was not dead and the cause of the osteomylitus. All of my teeth are fine.
It is now December 2011 I am 22. I am in the 3rd and final of my university degree. This year I have had many episodes/flare ups of my osteomyelitis - even though I always have it- my face can flare up and swell more and the pain is worse and becomes unbearable. This year I have been admitted into hospital twice.
First in April- the reason for this flare up I believe to be because of stress with work from university as I had 4 exams in a week so lots of intense studying. I had IV of antibiotics and Painkillers in hospital which seemed to work. I was in hospital for 4 days.
August of this year I was admitted for the second time. This was a very different experience for me and not a pleasant one. My consultant was not informed that I was admitted and I had doctors which new nothing about my Illness working on me. I was in for 8 days. I was not happy and did not feel any better from me entering hospital until the time I left. Normally when I am given metrodisonal and clindamycin through IV this reduces the swelling this did not happen and the swelling started to go to the side of my throat.
After seeing my consultant he suggested that we operate again as the anti biotics are not working as effectively. I really want to finish my degree at uni so I am trying to simply power through the pain. My consultant is fantastic and we work together as he rightly says nobody knows my condition as much as me. So I am delaying another operation at the minute. The operation Wil not guarantee that the osteomyelitis will go completely and this time he would have to operate externally which will leave me with a big scar. This is the reason for him not wanting to operate before with me being young he does not want to leave me with a big scar.
At the minute I am in the middle of another flare up it is close to Christmas and I do not want to be in hospital again So I am trying to control the pain at home.
A few things I have forgot to mention: at one point my consultant explained to my mum the pain I was going through like having 10 abcesses under each tooth on the side of my face ( hopefully this will put the pain I go through in context)
Also factors I have found which make my osteomylitus flare ups worse:
Cold weather (the reason for my recent flare up)
The change in weather
Lack of sleep
Cold drinks
Alcohol assumption when I am having a flare up.
Finally, sorry if my story is a bit all over the place it is hard to remember everything that has happened in 8 years. Please anyone get in touch who have this condition maybe we can help each other?!
8 likes, 253 replies
marci02913 Osteomyelitisinjaw
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I have it in my jaw also. I began visiting my dentist 2 years ago. My back two molars were killing me. He sent me home telling me nothing was wrong. I went back every month. He sent me home. Finally after 4 or 5 visits he decided to do a root canal on one of the molars that hadn't had one yet. I only have 2 molars on each side as the 3rd ones were pulled when I had braces. That did not heal and I continued to return to him, being told I was just sore from a root canal. 4 months later I called him on his cell over the weekend and told him he was going to meet me at his office at 11:00 p.m. and shoot up my jaw with numbing medicine. It is impossible to sleep with that kind of pain. Nothing I took helped. I was a nut about brushing, flossing, etc., so I was blown away at what was going on.
I met him 2-3 times a day over a holiday weekend to get shots which gave me about 4 hours of relief.
The following Monday I went to an Endodontist. His assistants met me at the door and helped me to a chair! They said "you must be in so much pain!". I thought, how do they know! lol They had seen the x-rays my dentist took. The dark area below my teeth, which both my husband and I kept asking the dentist about was actually nothing but infection. The jaw bone had been eaten away. Oddly I did not swell a lot, some but not bad. Once the teeth were opened up, they were like 2 volcanos of infection. They drained for one solid hour, an assistant holding suction tubes, one on each tooth.
This guy did two re-treats of both teeth, both having had previous root canals. After two weeks I went back as the pain seemed to worsen and was told I was just sore from having had root canals. I was so miserable with pain. It really was agony.
A week later landed me in an Oral Surgeons office, who told me right off I was going to lose both molars and that I most likely had osteomyelitis. I was so upset but felt that just pulling the very back tooth would help. That tooth popped right out--no bone holding it in. Note-I had told both my dentist and endodontist that when I bit down, my teeth were squishy. Its because the bone was gone.
I held out for 3 months. Ended up back in the oral surgeons office the day after Thanksgiving and lost the 2nd tooth. He found cysts in there and finally did biopies and cultures. They could not determine what type of infection it was.
Christmas Eve found me getting an MRI of my jaw, which indicated osteomyelitis, an infection of the bone. I was then sent to an infectious disease doctor.
The first of February I began IV therapy for 6 weeks. I administered the antibiotics myself through a picc line in my arm. 4 sessions of IV's, 2 different antibiotics, throughout the day for the six week period.
I suffered a lot of pain, and the inflammation really spiked my 2nd week into the IV therapy. It hurt a lot after I was done and I feared it was not gone but I was told an MRI would not help as they wouldn't be able to distinguish inflammation from infection at that time.
Its been almost 5 months since the IVs. The pain is always there, thank goodness not the swelling.
I was looking for info on weather affecting the old infection area as I'm really starting to suffer again. I've read that once you've had the infection, it usually comes back within 2 years.
I'm curious if anyone knows anything about that. I can't imagine what you have been through all these years. It has affected my arthritis in my back, everywhere.
Do they tell you it can't be healed? I was told it can. I'm curious. I can't have implants until the bone fills back in. I don't think I will have them as I don't ever want anything touching that area ever again.
You have my sympathies. I truly hope by now you have received help. Good luck.
Rosana marci02913
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marci02913 Rosana
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Susie4016 marci02913
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After my two months of 500 mg Levofloxacin, the pain and swelling came back about a week or two after taking the last pill. During the time I was taking this medication, it never went away, but it lessened.
From reading every post here and elsewhere, I think I need to find a doctor or medical facility who are experts in this. Most doctors I have seen are sympathetic and provide antibiotics, but really don't seem to be experts in this field. I feel every day this goes on is sending me deeper into an abyss that so many never climb out of.
I know I couldn't take Levofloxacin long-term. I barely made it to 2 months.
I'm going to try and find research on osteomyelitis and contact the authors, etc. I just think going from doctor to doctor is not helping me.
If anyone has any information, could you please post it here? Thanks
mick118 Susie4016
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Usually levofloxacin(or ciprofloxacin) is also prescribed with rifampicin. They both have very good bone penetration.
The symptoms did get easier for me with levofloxacin over time.
Levo+rifampicin has the highest success rate of any antibiotic known to exist - but you have to stay on it till you have no active infection. This is particulary true for staphylococcus aureus which is always the primary bacteria responsible for dental implant induced osteomyelitis. They even have a higher success rate than vancomycin(which must be given intravenously)
Susie4016 mick118
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Thanks for your help.
I go back to the infectious disease doctor next week. He is smart, and kind, but has't treated many people with Osteomyelitis. I'm not sure how he will address this new flare-up. He's not threatened by my input, so I'm trying to sort this all out.
I tried to research my body pain from taking Levofloxacin for 2 months, and found only one item which indicated fluoride was either in the medication, or caused the medication to deposit fluoride in the body, which caused the pain. The treatment that seemed to work for others was taking ALA, alpha lipoic acid according to the Cutler protocol every 3 or 4 hours around the clock. Cutler protocol can be googled for more info. I have done that, but still have pain in my body, especially around my ankles and feet. To be fair to the protocol, it indicated it must be done long-term-as much as a year or more, but averages 3 months to see improvement. I am fearful of the long-term side effects.
I've done a bit of research on medications, and will also post that.
What do you think?
marci02913 Susie4016
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I was sent to an infectious disease doctor. He was very familiar with osteo in the jaw bone and other areas. His IV therapy antibiotic combo seemed to heal me for the most part. Time will tell if I'm cured.
I would recommend seeing someone like that. Infection in the bone is very hard to kill. It takes a long time, specific antibiotics. I was lucky to have the picc line only 6 weeks. Some go 8 weeks, and in some cases longer.
Hopefully you can find a doctor in that field. Good luck
marci02913 Susie4016
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Susie4016 marci02913
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My doctor is an infectious disease doctor. I'm assuming you are in the UK? It would be great to start a list of infectious disease doctors who are also experts in osteomyelitis.
Is the picc line the IV you took? Can you tell me what was in the IV therapy combo? It would help for me to take this to my own infectious disease doctor.
marci02913 Susie4016
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No. I am actually in the United States. Utah. I will look in my files tonight to see what antibiotic combo I was on. Yes the picc line is a port inserted into your arm-at least in my case--it can be different places for people who are on chemo for example.
It stayed in my vein, and I did the flushes and hooked up the medication. It was very easy, as now they have the medication in small round balls that no one can notice. I would put mine in my pocket. I did it at work, anywhere I was when it was time.
Once a week a nurse would come to my home and flush the lines, draw blood, and replace all the bandaging. Overall it was really not a bad experience. I'd done it before but had to drag a pole around and hook the bags up to it. That was a harder way to do it for sure.
I will be in touch. All the best to all of you suffering! I'm afraid I'm going to lose another tooth as all the jaw bone has just ..........I don't know.........melted away it seems. I need to get in to a new dentist for a start.
marci02913 Susie4016
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Susie4016 marci02913
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Thanks for the clarification.
I need to go back and re-read your whole story.
If your infectious disease doctor in Utah is good, I would consider travelling there. I live in southern California.
I was told I could lose 1/3 of my jaw through surgery. I did read in some of the research that it could be easier to control the infection if a specific tooth is removed. However, I plan to go to my grave with everything left that I was born with unless there is absolutely no other way.
So sorry you are going through this. It does help to feel there are others who are working on this together.
marci02913 Susie4016
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My doctor said if it went to the point that I had to have part of my jaw removed (he even showed me a section that was taken out of someone). Blah. Anyway, he said they take the bone from your hip and graft it into your jaw. I pray I never have to go down that road. Thankfully for now I'm not looking at something that invasive. I hope I am on the mend so time will tell. I just don't want implants (not enough bone regrowth yet to do that).
My doctor is actually very good. Every person I talked to in various hospitals, labs, oral surgeons, endodontists, dentists, and other 'victims' out there. lol. My step son was also treated by him for something else. He is very very good. His assistant..................you have to prod her along but it is worth it. What I say on here, STAYS on here. heh
I hope he doesn't mind me posting this but he really has helped many many people.
Emis Moderator comment: I have removed the link as we do not publish links such as this. Please use the message service to exchange this information. See link below for instructions on messaging.
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
marci02913 Susie4016
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catherine17042 marci02913
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marci02913 Susie4016
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I did reply on this but I don't see my reply posted. Did you get the info on my doctor?
Susie4016 marci02913
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No, I didn't.
Your email says it is waiting to be moderated.
I've never used private mail, but can you send it that way?
I was hoping all information would be public to help everyone, but we can all private mail each other if that is necessary. Thanks so much!!!
marci02913 Susie4016
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I don't know what happened to that post but yes, I would rather email medication and doctor info privately. I don't know how from here. Do you?
Emis_Moderator marci02913
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See the link in Marci's post above on how to use the Private Message service.
Regards,
Alan
catherine17042 Rosana
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teresa98060 Rosana
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melindasmakeup teresa98060
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teresa98060 melindasmakeup
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marci02913 teresa98060
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marci02913
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